A riveting but often distressing article by BBC Scotland's social affairs correspondent, Lucy Adams, explains in extensive and harrowing detail how 'Long COVID-19' has left her utterly exhausted for the past eight months.
She tells us: 'I look fairly normal. There are bags under my eyes but generally I look okay. It is one of the first things people say: "You look fine – you must be feeling better?" And there is a lesson there.
'Over the years as a journalist I have done news stories and documentaries that have touched on the lives of people in chronic pain. The question was how to convey their suffering on camera and get viewers to empathise with something that was essentially invisible? The answer was to tell the story in their own words. To allow them to give voice to the pain. I am more comfortable telling other people's stories.
'But for once I need to tell my own, because I feel I need to explain what "Long COVID-19" is like. My sick note from the doctor says "post-viral fatigue after contracting COVID-19". For me, it is painfully evident but others can't see how it has affected me for months.
'Like thousands of people around the country, I fell ill with Covid symptoms in mid-March. I am in my early 40s and was generally pretty fit and active, but this hit me hard. My limbs and head ached, my throat burned and my head was foggy. But I managed to lie on the bedroom floor to teach the kids about cheetahs or some such thing.
'I could still walk the kids round the block to get them some fresh air but then I would sleep all afternoon. After seven days, my temperature went up from a fever of 37.7C (100F) to a burning hot 39.4C (103F) and stayed there for 10 days. The pain in my back was agony. My eldest daughter, who was then seven, developed a fever at the same time but she was mainly just tired, while her younger sister had one day of fever and then recovered. My husband had no symptoms.
'For me, the illness lingered. I couldn't sleep. I felt nauseous and had horrific abdominal pain. I sweated and shivered all the time. I couldn't stand up but lying down was painful. I was desperate to get a test but, at this early stage in the pandemic, there were none available outside hospitals. My daughter and I both got a full body rash and lost our sense of taste and smell. Then came the breathlessness. First from walking up the stairs. Then just lying in bed, it felt impossible to fill my lungs.
'I called the NHS telephone helpline and was advised to stay at home unless I couldn't speak at all or my lips turned blue. My daughter became breathless too but then she seemed to recover. The NHS suggested COVID-19 would last about two weeks, yet I was still getting fevers and palpitations and so many other symptoms after two months. It was then that I read a British Medical Journal
article by Paul Garner, Professor of Infectious Diseases at Liverpool School of Tropical Medicine.
'I cried with relief. He was going through the same pick 'n' mix pattern of symptoms. Not only that but he had just started feeling better. He had got ill around the same time as me so I thought that must mean I was days away from recovery. Unfortunately not. Professor Garner's next article detailed how he had gone for a long walk and relapsed. He described it as a game of "snakes and ladders" and talked about "phantom speed cameras" with which it is impossible to know what the limits are.
'On bad days, it feels impossible to move from bed. The mattress feels like a ship rolling in a rough sea, my hands shake, my vision blurs, I struggle for breath, my body shivers and vibrates, and every sound cuts through my head like shattered glass. I've never experienced anything like it. I've had malaria before. Looking back, that was a walk in the park. The psychological impact of not getting better for such a long time is hard to explain.
'I can still do things but every action has repercussions. If I empty the whole dishwasher at once I might get a migraine so I do one layer at a time. If I go for a walk, I have to go straight to bed afterwards. If I walk too far, I might end up with a fever. Vertigo, brain fog, tremors and heart palpitations come and go as they please. And there's the constant sinking fatigue – plus a gnawing anxiety because I don't know when I will get better.
'And no-one seems to know what is happening in my body.
'My children talk about "the time before mummy got sick" and ask regularly when I will be better. I drop pans when cooking for them as my hands shake so much. The other day I keeled over in front of them because of vertigo.'
John Lennon said that his inspiration for one of his most evocative songs came when his three-year-old son Julian showed him a nursery school drawing that he called Lucy – in the Sky with Diamonds
, depicting his classmate Lucy O'Donnell.
Lucy Adams would happily settle for jewels much less lustrous if only she could get her life back to normal. You can read her article in full online
. The Scottish Review
staff send her our very best wishes for a full recovery.
Researchers have warned that the UK will be less well-positioned to deal with a coronavirus communications crisis in the months ahead due to a larger proportion of 'infodemically vulnerable' citizens. Low intake news consumers have grown from 6% at the start of the coronavirus crisis to 15% by late August, a report by Reuters Institute for the Study of Journalism has revealed.
The 'infodemically vulnerable' are defined as those who 'consume little to no news about COVID-19 from news organisations and have low trust in COVID-19 information from news organisations'. The group, which makes up an estimated eight million people, highlight a larger proportion of people at risk of being less informed, uninformed or misinformed about the pandemic.
Announcing the findings, authors at Oxford University said that while 'government by communication' is a central part of handling the crisis to instil regulations and other formal measures, gaining the public's support is now more difficult.
'Government by communication grows harder as fewer people follow the news or trust the government, and when many feel neither the news media nor the government are helping them navigate the crisis and how to respond to it,' said researchers Professor Rasmus Kleis Nielsen, Dr Richard Fletcher, Dr Antonis Kalogeropoulos and Felix Simon.
For a large minority group of low news consumers, the risks are greater, the report adds, explaining: 'The infodemically vulnerable represent a small but significant and growing part of the population more at risk of being (at best) less informed than the public at large, and (at worst) being uninformed and more susceptible to outright misinformation'.
The report warns about the need for the second wave bringing a resurgence in news use. The past six months have seen an overall decline in news use and trust in news, and, says the report: 'Unless this changes, the UK will be less well positioned to deal with the coronavirus communication crisis in the months ahead, in part because it has a much larger minority of infodemically vulnerable people than earlier in the crisis'. (This report was, of course, written before we had very promising news of a possible breakthrough on the pandemic vaccine front on 9 November).
Those under the age of 35 were more likely to be infodemically vulnerable (20%) in August than those aged 35 and over (14%), but the group was evenly split by gender. Overall, across the population news consumption has declined. The proportion who got news about COVID-19 at least once a day per week on average dropped by 24% from 79% in mid-April to 55% in mid-August.
Meanwhile, trust in news organisations as a source of information about the pandemic has fallen 12% from 57% in April to 45% in August. Only 61% of people think the news media have explained what they can do in response to COVID-19; similarly 58% think the same about the UK Government. Both figures have fallen substantially since April.
However, most of the UK public are informed about COVID-19 as a disease and have behaved cautiously and mostly followed government guidelines, the survey found overall. The research, which took an online panel survey of a representative sample of the UK population between April and August, was published as Communications in the Coronavirus Crisis: Lessons for the Second Wave
, by the Reuters Institute for the Study of Journalism at Oxford University. I am grateful to Mariella Brown, of the Society of Editors, for her help in compiling this article.